title: The unique experience of spouses in early-onset dementia.
abstract: To date, few studies have examined the experience of spouse caregivers living with a person with early-onset dementia. Moreover, few support resources are offered to these family caregivers and fewer are still tailored to their unique trajectory. The aim of this qualitative study was to document the lived experience of spouse caregivers of young patients in order to inform the development of professional support tailored to their reality. A sample of 12 spouses of persons diagnosed with dementia before the age of 65 participated in semistructured interviews. Six themes emerged from their caregiver trajectories, namely, difficulty managing behavioral and psychological symptoms, long quest for diagnosis, nondisclosure to others and denial of diagnosis, grief for loss of spouse and midlife projects, difficulty juggling unexpected role and daily life responsibilities, and difficulty planning for future. Results open up innovative avenues for the development of interventions geared to facilitating role transition for these spouse caregivers.
authors.affiliation: Faculté des sciences infirmières, Université de Montréal, Centre de recherche, Institut universitaire de gériatrie de Montréal, Montréal, Quebec, Canada. francine.ducharme@umontreal.ca
authors.forename: Francine
authors.initials: F
authors.lastname: Ducharme
authors.forename: Marie-Jeanne
authors.initials: MJ
authors.lastname: Kergoat
authors.forename: Pascal
authors.initials: P
authors.lastname: Antoine
authors.forename: Florence
authors.initials: F
authors.lastname: Pasquier
authors.forename: Renée
authors.initials: R
authors.lastname: Coulombe
mesh_terms: D000223:Adaptation, Psychological; D017668:Age of Onset; D000544:Alzheimer Disease / Q000523:psychology*; D017028:Caregivers / Q000523:psychology*; D003717:Denial, Psychological; D005260:Female; D006117:Grief; D006801:Humans; D020961:Lewy Body Disease / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D020774:Pick Disease of the Brain / Q000523:psychology*; D036301:Qualitative Research; D012944:Social Support; D018454:Spouses / Q000523:psychology*; D013315:Stress, Psychological / Q000523:psychology
keywords: early-onset dementia; lived experience; qualitative study; spouse caregivers; support interventions